Still able to do ADLS, make VERY simple food, etc. I need some suggestions as to what to have the caregiver do. Where is a good place to start with in-home assistance? I know the duties will change as the disease progresses. Sharing your experiences would be very helpful. Thanks!
How many hours and how many days are the caregivers coming? Do you already have a cleaning person? That's where I started was with someone to clean my mom's areas, change her sheets, etc.
The caregivers I had for mom (before assisted living) did everything for mom when they were. here so that I could leave or tend my garden or just stay in my room alone and exercise, etc.
So, they came at 9 AM and made her breakfast, gave her her pills, cleaned up from breakfast, unloaded the dishwasher as needed, had her take her shower and get dressed, did her laundry, played games with her, did exercises with her, took her on outings sometimes, checked on her incontinence supplies, encouraged her to drink her water, etc etc. Everything I would have been doing if they weren't here.
Basically they had a balance of some chores and some time to chat and play cards, etc. It was nice for mom to have a buddy and someone to keep her on track since with her dementia she was often confused as to what she should be doing.
I'm not sure how your hubby is, but I also directed the caregivers to be assertive. If you want him to do X, Y, and Z or have XX for breakfast, then tell them that's what you want done. I told my gals not to ask mom what she wanted for breakfast cuz she wouldn't know or would always choose toast where I wanted her to have eggs or yogurt. Or she'd say no to almost everything. So instead of "Do you want to do some exercises now?" I learned that we had to say "OK, time to do your exercises". She could still resist but don't ask a yes/no question when the only acceptable answer is yes but you'll likely get a no or I don't know.
I'd also tell the caregiver that you're new at this and trying to figure it out yourself so if they have any suggestions, you're open to hearing them.
If you post with more details, you'll get more answers that are more helpful.
Can he still be taken out? Like to an activity at the senior center, or to a movie, or a restaurant? They can do things together while he's still able. Of course the caregiver will help with hygiene care (showering, bathing) and will clean up after the client themselves (like doing their laundry, making or changing their bedding, etc...). The caregiver is not a housekeeper for the whole family though. Not that you would make the mistake in thinking so, but many people do make that mistake and think that our job is to be the housekeeper for everyone who lives in the home. It is not.
If the caregiver starts taking your husband on outingsand you give them cash to pay, have them save the receipts for whatever money is spent. Also, you can agree with them privately that you will pay for their lunch or movie or whatever because an agency-hired caregiver gets paid next to nothing and chances are she (or he) can't afford to join in on a lunch out or a movie with a client.
Dad's caregiver came in at 7 a.m., picking up the daily newspaper from the driveway, get Dad up for the morning, helped with showering and picking out clothes [without help Dad would wear stripes with checks], and helped him walk down the stairs. She would get breakfast ready, Dad was a cereal type of person so that was easy for her.
While Dad read the newspaper, his caregiver would do light household chores. The Agency had a 3-ring binder that she would check so she wouldn't be duplicating chores that were done by another caregiver's shift. Each shift would write what they did and how Dad was doing.
The caregiver would take Dad outside for a short walk with his walker. Usually Dad would nap afterwards. Caregiver would get lunch ready. Afterwards, if it was a nice day Dad liked to fuss with his garden and she would help. She enjoyed helping outdoors.
When need be, the caregiver would take Dad to his doctor appointments, and afterward would call me to let me know how it went. Usually doctor appointments were set an hour before lunch time, as Dad loved going to Burger King and he would treat the caregiver for lunch [otherwise, the Agency required their caregivers to bring their own meals for their shifts]. Dad liked this caregiver as they had the same background, both born and raised on a farm. And she had a good sense of humor as Dad was a punster.
Then the 2nd shift came in, the caregiver checked the 3-ring binder, and did what she/he thought needed to be done. The caregiver would get dinner ready. Dad liked TV dinners [yes, I know high in sodium] but at his age he might as well enjoy his meals. Usually the 2nd shift were much younger, so there wasn't the conversations that Dad had with the 1st shift.. Same with Dad's 3rd shift. Dad didn't mind those caregivers being on their cellphone, less awkwardness trying to get a conversation going.
When Dad sold his house, he moved into senior living. He was able to bring along his 1st shift caregiver and that gave him a routine as he started to journey through dementia.
As I see it with any progressive disease retaining independence is the most important thing.
Not only for confidence but, encouraging to move, live normal and learn new things.
Also, be aware of any personality clashes. Your father may not care for one of the caregivers just due to human nature. You may want to consider changing caregivers even if there is no fault on the caregiver’s part if their presence has a detrimental effect on your father.
Overall, just “be aware” as not all caregivers are created equally.
I hope I do not sound racist here, but from my experience, Asian caregivers are outstanding. They are very attentive. (Please do not throw angry pixels at me.)
You are speaking from your experience - no need to apologize although others may do outstanding work, too. What are pixels?
Most important is the language / barrier(s) ability to communicate need(s)(ed) work done.
The importance of engaging with the client, talking with them, discussing a show or book, going on a walk together etc tends by many to be overlooked, as some folks think of the caregiver as a housekeeper who should be constantly busy neglecting the more important need of companionship. If anything more than washing the dishes, wiping down the table and light laundry are needed then it will become necessary to hire a housekeeper if that isn’t something a family member is willing to do.
What planet are you living on? NO ONE who has an agency-hired caregiver is also going to hire a housekeeper.
I was an in-home caregiver for 25 years. Nearly 15 of those years were working for carw agencies. Then I went private duty working for myself. Most clients, families, and the homecare agencies they work for expect them to do the jobs of a full domestic staff as well as engage the client and provide companionship.
The agency will tell a caregiver they don't have to stand at a kitchen sink for 3 or 4 hours at a time washing a month's worth of dishes, but they do.
They say no one expects the caregiver to get down on their hands and knees and scrub a filthy floor that hasn't been cleaned since the Eisenhower administration, but really they do. Of course the caregiver can take a break to change a soiled pull-up, shower them, and work on the puzzle that every homecare agency commercial shows an old person doing with their caregiver.
Agency hired caregivers learn quick that if you don't cover everything you will see your hours greatly reduced. You will see no work at all coming in for you.
This is the reality of agency-employed caregivers. When you're making the good money in private care most people expect even more.
Or if it does not bother him GREAT!!!
If he is resistant take "baby steps"
"George, this is "Sue" she is going to help me. (notice the help is for YOU not him)
"Sue" can visit with you the first time, and you can show her around just like you would a friend. Let "Sue and George" get to know each other a bit, she can chat with him..just like a friend would. She can help you fold some laundry or load the dishwasher.
Next time you need to run to the store for a bit...leave "Sue and George" for an hour or so..
He will get to know that she is there, she can help him if he needs it.
Now to the things you want her to do.
I might have had a different outlook on things the caregivers I had did. My thought was they are there for my Husband and his needs.
They would light clean the bathroom he used but did not go into mine.
They would do a load of my Husbands bedding and or clothes but I would not have them do mine. They would fold and put away his things, not mine.
If this person is from an agency the agency might have a list of things that the caregiver can do and more important a list of what they can not do.
If that is available use that list to make your list of tasks for the caregiver.
Write EVERYTHING down.
If it is not written down then there is a reason / excuse that it was not done.
I also gave instructions that he was to be checked for a wet brief every 2 hours. This did 2 things Most important it repositioned him and his skin was checked for any redness that might indicate a rash or pressure sore.
I had caregivers keep a log or note book with what "happened"..
did he eat lunch? If so how much.
did he have a BM?
for you, be flexible if you wanted the laundry done but your husband wanted to go for a walk or there was an extra messy trip to the bathroom or they were engaged in a game..the laundry can wait.
The important thing is you get a break, get out of the house take care of things that you need done, or even if you stay in the house lock yourself away and read a book, take a nap, play a card game. This is time for you.
The conversation has changed to someone else's needs? This is confusing.
And/Or I missed something...
Some caregivers were excellent but I had to let some go. Being a companion is part of their job! You will need to do drop ins to check activities or have cameras installed. We did both.
Good luck and you will feel a huge relief. Remember if your mom has complaints it may or may not be the truth.
Just read Burnt caregivers post and I agree with her assessment.
* Read the contract that you sign with the in-home assistance agency. Ask for personal and professional (work history) references. When you check references, ask if they are on time, listen, follow-up, dependable, honest. Agency may not provide you specifics re references. Use your own judgment in how to proceed.
* Ask (if you can) get copy of driver's license and/or ask agency how they vet their workers (some agencies are so desperate for workers, they may not vet or do their due diligence (checking references, criminal check - which an agency should be doing - not you).
- I've had to pay for my own criminal ch twice due to being a massage therapist and working at retirement community to become vetted to work independently with residents.)
* Once you create an initial plan, write everything down, like a contract of 'understanding' so everyone is on the same page.
* Include that duties will change 'time to time,' depending on (my) your needs.
* The question(s) you need to ANSWER are___________
- What do you need now?
- What do you want them to do, i.e., laundry, shopping, dusting.
* Write down questions you have as a reminder to you (and serves as a good list to ask others so you can ask the same questions and see what a person says - to compare).
Ask_________________
- How do you handle a stressful situation?
- What is a stressful situation to you?
- It is important that you are on time, keep to schedule agreements. Can you do that? (they may have children and things come up).
- I would like you to do XXX.
- How do you feel about doing these things?
- Do you have experience doing XXX.
What is your availability (days / times)
Are you offering an hourly wage or are you asking them what they charge?
Be prepared re payment (amount and how paid: cash, check, weekly / biweekly). Keep payment records.
* As you can, put personal belongings away (check book, cash, etc. valuables).
People do steal so be aware of this and make plans accordingly.
If possible, have a friend with you to interview together or be there for support.
* Revisit your 'list' as often as you feel you need to - to adjust duties and also to go over how they are doing with specific duties. You can be 'nice' about it when referring to "Laundry: wash and then fold" - perhaps they aren't folding and putting it away ? Meals: Cooking / prep is okay although they are leaving things out after they prepare a meal.
- This list will come in handy when you go over it.
- It is a good idea to give them 1-2 weeks (?) to see how they do. The list will serve as a 'thank you' to acknowledge what they are doing and doing it well. Do use the list for positive reinforcement / appreciation, not just 'negatives - you aren't doing XXX and I need you to do XXX, can you do this from now on?"
Since you are hiring through an agency, discuss how things are going with the agency manager as needed. The agency is responsible to ensure that things are going well and intervene with care provider as needed. Caregiver is their employee, not employed by you.
In conclusion:
Write everything down; have someone do if you cannot.
You want a tracking of work needed, work done, and how done (okay, need improvement).
Gena / Touch Matters
The care plan governs the care provided and that is based on client and family needs and allowable duties by the respective staff involved. The POC prevails and is developed at the start of in-home cares through an agency.
We had a 50 mile radius service area with some 350 clients and a cadre of 12 RNs, 8-10 LPNs, about 15 CNAs, and a few Homemakers. We also provided Hospice and I was part time in both services. We were Catholic hospital affiliated and everyone was Union.
As the person overseeing and paying for this service, you and the person for whom the cares are being provided, have many rights. If you don't care for any particular person coming in - whether RN or other, call the agency and ask that they not send that person again; your choice on the why of it, can be simple personal preference. Don't let sub-par care happen more than once. And they are responsible for taking out any trash that they generate.
Always remember that you're the boss while they are in your home.
Allow one counter area in a bathroom for handwashing supplies, gloves, etc, that will remain there for staff use; their job to keep it clean and stocked. Allow space for a tub of supplies like dressings, etc. that they'll bring in for their use for client care. If it will help with mobility and safety issues, ask them to bring in an OT or PT to recommend DME like a hospital bed, trapeze for the pt to move in bed, bedside commode (which staff takes care of on days they're in the home), walker, wheel chair, etc., as needs progress.
Since currently able to do ADLs, the CNAs will be assisting and helping with set up and stand by. The goal is to keep the client as mobile and independent as possible for as long as able. CNAs can assist with meal set up and eating assist, but not food preparation. Their time is spent with the client, helping or just providing supervision while family is away. Some agencies require that another person be present while they're in the home, others don't. CNAs can help with walking and maintaining mobility, caring for a cath if only emptying.
I'd advise against allowing a meek or timid person in more than once; they are usually too green and unable to provide the full range of assessment and detailed cares that the more seasoned staff provides. The exception is a new one that is full of potential and that you take a shining to, then you can be patient and bolster their confidence in learning in-home cares.
I'd speak with the RN case mgr about your needs and expectations; that RN will develop a plan of care (POC) with Nursing diagnoses that fit the client's needs and the measures to meet them. These are different than medical Dx , but there's some overlap. The RN will come in and supervise some CNA visits and pls try to discuss any concerns on a frequent basis so that everything is clear. The RN will largely determine and assign the CNA duties, based on your and your LOs input. Keep abreast of that POC and request any changes you see as needed as things progress.
I hope that this agency is a good fit and that you're provided with some needed relief.
Best -
Whose experience am I going to speak from except my own? I worked for care agencies for 15 of the 25 years I have been in the field of homecare.
I have NEVER worked for a client (even hospice clients and ones who were chronic invalids who could do nothing for themselves) who in addition to their caregiver had a separate hired housekeeper. I have NEVER worked for a family that brought in a separate housekeeper to do the cleaning.
I never knew a caregiver in the field and I know everybody, who ever worked a homecare job where there was a separate person hired to clean the house. In cases where the client lived with family, they kept up on the cleaning and chores.
This is the real world of homecare. So please, don't knit-pick my language. The truth remains true even if the language used to tell it isn't poetic.
I currently own and operate a homecare agency. I went and opened a case last week which we turned down. An elderly woman's daughter called about getting some homecare for her mom who lives in a mobile home. She described the needs as being a bit of light housekeeping, make her mom lunch, supervise her with hygiene care, and remind her to take her meds because she's a little forgetful.
The reality was a mobile home so hoarded and filth that is should be condemned. An elder completely out of it with dementia to the point where she was clearly sitting in her own sh*t and could not tell me what day it was or her own address. I asked. After 25 years of service I can also tell when a person hasn't had a bath or shower in a very long time and if their clothes have been on them for weeks. I told the daughter I won't send one of my employees into conditions like this and that I was duty-bound by the laws of my state to report to APS on the living conditions.
People who hire caregivers don't unnderstand what 'light housekeeping' is. A 'little forgetful' is not completely out of it with dementia.
Homecare agencies only concern is putting a worker in the house and collecting the money. They don't care what they're sending them into. I do because I was that worker for a very long time.
There's an exception to that Homemaker comin in for light household chores and that's with folks who have a PCA and RN case mgr through County Waiver programs.
I had several on my caseload when and RN Case Mgr working for a hospital-affiliated Home Care and Hospice agency. We had a 50 mile radius service area, on call 24/7, a cadre of 12 RNs, about 10 LPNs, quite a number of CNAs, and Homemakers, all but the RNs had a scheduler to keep all the needs covered.
This was over 20 yrs ago and we know that healthcare isn't what it used to be. Even then, I had to pull teeth with the County case mgr to get allowance for the 1-2 monthly visits I needed to make for client assessment and staff supervision; my documentation was free to them.
I'd imagine that these days, many Home Care agencies choose not to take Waiver clients due to the low reimbursement for services, leaving only CNAs and Nurses who are not supposed to be doing any home-related duties.
We also declined to take some referrals when the elderly could not safely remain in the home with added services and those resulted in family making other arrangements. We also dropped a few clients due to unsafe situations in client's homes. But, we had a few rural clients where we went through cow gates and trod through manure to reach the homes!
Appreciate this post. In the forefront of my mind, with my (very difficult) Mom as well..
1. Put your name and number somewhere, in a prominent place and show it to them when they show up. Also, if there is a notebook that they need to record in, show them where the notebook is. Also show them where the gloves are.
2. When a caregiver comes for the first time, greet them and confirm their hours and who will be relieving them. If it is another person from the agency, just referring to the agency is sufficient.
3. Tell them what their priorities are. Let them know what your expectations for care are. For instance, the absolute #1 priority for us was to ensure that they were with my Mom at all times. I didn't care whether dishes were done. They had to be with my Mom (she was a fall risk)
4. Develop a "list" of the rules of the house. (e.g. no eating in the bedroom, where do dirty clothes go, use of TV, use of air conditioner, use of phone, use of internet, etc.)
5. Show them their bathroom (make sure there is soap and something to wipe their hands on); show them where towel and sheet storage is; explain how appliances work (specifically the microwave), explain the routine of your Mom.
6. Show them any potential hazards of the house (e.g. stairs, rugs, etc.)
7. If your Mom has any preferences on how to be addressed, let them know. If your Mom has any odd "normal" behaviors, let them know.
Remember that the more you duties you give the caregiver, the less time they spend giving care to the person.
We had a lot of people who only came once and never again. I heard that my Mom was very active at night, something they were not expecting. My Mom also used to catch them at lies and bully them.
To my Mom, I always supported the caregiver. That allowed them to say to my Mom "Your daughter says I have to do this." When my Mom quizzed me, I said "yes, I told them that", regardless whether it was true or not, and then did my research with the caregiver after the fact. My Mom was a bully...and my Mom didn't remember correctly.
I stopped in-home care after about 2 years. That was because the agency couldn't provide people for shifts when the original person called in sick. In addition, we had many of them who couldn't measure up to our standards (like the person who got into my Mom's bed with her shoes on, or the person who hid out in the kitchen while my Mom was calling for help or the person who took apart the wheelchair.)
There is probably more, however, these are the things that I remember at this time.
Welcome to the journey!
P.S. We had a housekeeper that came in every week. I was there to greet and take over for the caregiver after the shift ended. Towards the end, I stayed overnight in a different room. That way, when my Mom was badly behaved, I could understand first hand, what was happening (and that was how I knew that my Mom's memory was truly failing her).
P.P.S. I kept a list of every caregiver that came and a one line summary of their care. It came in handy because the agency would try and send the same person who I had previously rejected, about 3 months later, when they were short of people.
I think you would have been a pleasure to work for you back in the day when I still did caregiving. I loved when a client family was organized and stated plainly what they wanted and expected.
The caregiver whose shift is ending should always call the agency they work for and tell them the caregiver scheduled next has not showed up.
If they wanted to pay me to stay, I did but would never stay past the end of my work day.
The caregiver supervisor is supposed to send a replacement right away because agencies are supposed to have per diem employees or they are supposed to work the shift themselves if the caregiver can't stay and do someone else's hours.
They got along well with my mom and mom liked them.
Only one time, they sent out a new caregiver that was spending quite a bit of time texting and playing games on her phone. I was at home when I saw this caregiver constantly on the phone.
I had absolutely no issue with a caregiver receiving or making important calls. I wouldn’t have been comfortable leaving my home to do errands with this particular caregiver who loved playing games on her phone. I asked the agency to send out someone else and they did.
I suppose the service provided depends on what your particular agency offers.
I never asked for anything outside of what the agency provided. I always told the caregiver to feel free to eat meals and snacks with mom and to help themselves to coffee or tea.
Caregiving is a tough job! Show appreciation for their hard work. I appreciated any help that I got when I was caring for my mother.
And many agencies will also require the person hiring the caregiver/agency to sign an agreement that they will not hire anyone that has worked for the agency.
In both cases there can be pretty heavy penalties if either breaks the agreement(s)
It is advised that BOTH read the contracts to determine if there are restrictions to hiring / working privately.
EMERGENCY CONTACT Information.
If you are going to be leaving the house. Your cell phone number.
A second person to contact
The home number if there is a land line.
The address of the house.
Your full name
This sound ridiculous but in an emergency whoever is calling 911 should be able to give the full address, the name of the person needing help. And the dispatcher will ask for phone number in case the call is disconnected. (calls made from a cell phone may be bounced all over and not all areas have "enhanced 911")
If there is a POLST or DNR it should be visible
If the person getting care is on Hospice the phone number of Hospice should be plainly visible. (Hospice number is now the emergency call NOT 911)
Also include the patients doctors name and phone number (in case 911 responders need this info)
Also put together a basic First Aid Kit.
Flashlight
bandages
antiseptic ointment
hand sanitizer
Gloves
(I also put emergency contact info on the lid of the plastic box I put my First aid kit in)
The agency provides all the requisite disinfectant and gloves, etc, at least, the agency I worked for did so; we had a set up in the bathroom or near a kitchen sink of all those protective supplies.
Everything has gone in a downward spiral now, compared to the quality care we provided some 20 plus years ago.
What many people don't know when dealing with a homecare agency is that they really need to read the fine print on those contracts.
What most of them do is put in a stipulation that if during the one-year contracted period, if the client dies or goes into facility care, they are legally obligated to pay out a sum to end the contract.
Or on all the paperwork they sign every week on the caregiver's time sheets, there's an agreement that the ageny will pay only 'X' amount in cash damages should something happen.
The last agency I worked for was only liable for $1,200 in damages if something happened. That something could be oops, I broke a glass or sorry the house burned down. $1,200 was all the agency was on the hook for and every time a client or representative signature went on that time sheet, they agreed to it.
So, people be very careful with what you agree to when a homecare agency asks for in a contract. Read all the fine print and always read something thoroughly before signing it. Even your caregiver's time sheets.
I'm a little alarmed because if you have the caregivers scratching around for occupation there's a risk that they will be tempted to take over tasks for your husband in ways he doesn't need them to, and that will disable him.
What does he want to do, what are the parts of his habitual daily routine, that he is beginning to find a challenge?
whay are the needs for assistance? So you can leave house to shop ? So the person can be bathed or entertained with a game ?
list what you are having stress doing and see if they can do those things .
call aging local agency and give them specifics on the medical issue and stages and what care is needed in each